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Tuesday, February 8, 2011

I’ve been away for a while on a mission, a mission of taking care of the woman I love. Now I have a bunch of pent up things to say.

After all, we have a collection of those ANW pillows. I’m not even sure if they’re supposed to be free, but we have a collection of them. Maybe I should look into a recycling program.

I don’t mean to make light of the situation, after all this is serious business: surgery. I can’t imagine what it’s like. I had surgery, years ago: grade school, high school; broken bone stuff. The stuff that involves pins and wires. But I’ve never had surgery on my core, where all my muscles are, the stuff that supports my weight. I hope I never do.

Tough Love

It’s tough to have someone you love in constant pain. This whole thing started in 2002. That was the primer unrelated surgery, but it foreshadowed all things to come. The “series” of surgeries started shortly thereafter. (The doctors actually called them episodes at one time.) At first it was an annual event, an annual laparoscopic event. They’ll tell you it’s a quick, easy recovery. They lie. They told us one more should do it; that was so many ago neither of us believe there’s an end anymore.

When it started it was every 18 months, then 12, then 6 and then every 4 months. When you’re getting surgery every 4 months, you are in a constant state of waiting for surgery and recovering from surgery. There is maybe a week where there is a break, maybe.

I thought I was watching my wife die.

The State of Medicine

Modern medicine is great, at some things. I do believe my wife would be dead today without its miracles. It is poor in curing the cause, but it’s a godsend on treating the symptoms. At least sometimes. As much progress we’ve made, there’s still so much more to make.

The allopathic route was failing us once we fell into the constant surgery cycle. We started looking into alternative medicine.

As failing as allopathic medicine was, alternative wasn’t doing much better. We tried diet, acupuncture and various other regiments. There were gains, but nothing was hitting home.

This type of cycle weighs down on your soul. I was getting angry, pissed off at her disease. I already knew meditation, but wasn’t the best regimented practitioner. I went to anger management. There was marriage counseling.

Then we found Vodou and everything changed.

Vodou Changed My Life

We’ve always been spiritual people. It’s one of the things that drew us together. I’m not saying we were marching up and down the street shaking a tambourine, but there was always an exploration – often a gritty one.

I’ve written previously about being on the Bahamian Island of Eleuthera when Hurricane Katrina went over, turning to land a strike upon NOLA. I feel like a part of us turned with that storm. The year following the storm in February, 2007 we went to New Orleans for the first time and it changed our lives.

The spirit of the city was such that I had experienced visiting temples in India. There was an a-ha moment. We had found something and something had found us.

After that trip and that recognition, things began to fall into place. A path had laid itself out in front of us that led to interesting places. Saum got into Harvard. She started participating in reconstruction through the New Orleans Healing Center neighborhood project to bring critical infrastructure and healing to a part of the city that needed it. It opens this year. We initiated into Vodou, taking the path to priesthood. Then we found things that worked.

God Bless The Healers

The first thing that worked was a woman in NOLA that has something going on. Saum would see her and be pain free, completely. We started on a new path of things that worked. Massage combined with Cranial Sacral therapy took us from every 4 months back to 12. Not a complete cure, but a much better trajectory. Things were coming back into place.

Neither of us could have guessed 6 years ago what our lives would be like today. We would have laughed at you if you gave us an accurate prediction. I hope years from now, I can look back with the same feeling of absurdity and know that my life has changed, radically, again.

Surgery Stuff That Works

So after many surgeries, I wanted to share some stuff that works.

The Environment – I prefer a single-level floor plan. The bed should be an easy height for getting into and out of. It should be a short distance to a bathroom. There should be no stairs (coming home or moving around). It should be clean and clutter free. We also like chairs and tables close by so there’s a variety of places to hang out.

Record Keeping – Keep a list of all meds. We write when they were taken, we set alarms for the next time with ample prep time for preparing food if they need that.

The Menu – This was one of our more brilliant inventions. Time would come for meds and I’d ask what she wanted and she’d ask what we had. It took too long with too much backing and forthing and things being forgotten. The menu helped us organize what to buy ahead of time, organize it and see what we had when a decision needed to be made.

The List of Activities – When you have a head full of meds you can’t do complex math. Other activities may cause motion sickness (like TV or video games). Having a list of easily accessible distractions helps reduce stress and create variety. We’ve had Legos, board games, invisible ink trivia and many other great time-wasters.

Cold Packs – We have a heavy rotation of freezer packs (gel or herb) that come and go. We found heat works best before surgery, cold after.

Walkie Talkies – My brother bought me some years ago for Christmas for hiking and skiing. I don’t think he knows how much use they get. When I’m out preparing food, feeding animals, etc. she can’t easily get up or yell. The walkie talkie is a fun way to communicate remotely. (Cell phones would likely work here, but then I couldn’t say “roger that”.)

Visitors – I need care giving breaks. I also need to limit the amount of mental stimulation from the outside world my recovering bride has to deal with. There’s a balance to be met here. We are very thankful to our friends that help us. They sit in the hospital, they come to our house. Thank you.

Fun Stuff – From a big teddy bear, to catapulting Devil Ducks, we have a collection of fun things to play with. Maybe you load up Angry Birds (a simple game) or some other fun distraction like Homies. These are those old things you play with all the time. We are devil duck fanatics (they even come with us on vacation).

This is my list. It’s the short version, but I hope it helps.

Good Love

There was a time I thought my wife was dying. I was sad, depressed and angry. Surgery sucks, but we’re getting better at it. I’ve processed a lot of anger. I try to dish out a lot of love. This whole ordeal has brought us closer together. I don’t know if I’d change that. I surely never want to see her in pain. I always want to take it away. I dread it when I’m near exhaustion, but it’s my love, my wife that’s hurting. We wouldn’t be the people we are today without going through all of this.

It feels like my heart's been leaping in and out of my chest while I wrote this and I have goosebumps and chills... I'm on the verge of weeping, but, Urban, all of this is not unusual with me. Let me know if I can be of any help in any way. I have plenty of time to volunteer. If I can't visit, I'll keep giving you two plenty of fun distractions!